birthday, part 3?

I’ll have to break the party/birthday day photos up into a couple posts, because I took a lot, and I need an editing break. Plus, I think I’m about to crash blogger and my computer. We all need a break. :)


Jonah was great for his “party.” I use that term loosely only because it was so laid back and relaxed, it didn’t seem like a party. Which was a good thing. Jonah had a GREAT time hanging out with his grandparents, aunts, uncles, and cousins, and I loved having everyone here to celebrate. We ordered barbecue for lunch (if you’ve never had NC barbecue, you’re missing out), and had cake. Other than that, there was a lot of hanging out outside and playing basketball and baseball (not by me, don’t be silly).


Jonah wasn’t sure about his cake (as you can see in the video a couple of posts down) and he wasn’t really interested in presents, but he was in such a good mood. The child LOVES to be outside, and I’m already worrying about summer. He’ll be old enough to know he wants to go out, but not old enough to know why he can’t. Yuck. I wish I didn’t hate summer. But enough about that. We had a beautiful sunny day with highs in the upper 50’s. It was a little cool in the shade, but I prefer leaning toward the cool side for Jonah’s sake. He was in Heaven. I’m so happy to have gotten to celebrate his birthday another year. I do NOT take it for granted.

** Jonah got his adorable "2" shirt from my friend Meredith. She has an Etsy store HERE if you'd like to check her out. I don't think she has any photos of the birthday shirts up, but I'm sure you can contact her through Etsy if you are interested. WE LOVED IT! Thank you, Meredith!**

I wanted to let you guys know about a couple of things.

-         Jonah’s EB Auction has come to a close, and the preliminary total, before payments, was over $6,200. Amazing! Thank you so much to those of you who donated, participated, and/or helped spread the word. So exciting!

-         There is a new fundraiser over on Hope for Anton. Usborne books! If you are a parent, teacher, daycare provider, or grandparent, you will love this one. High quality, award winning children’s books (up through middle school age), with a portion going to Anton!!!

-         Today is National Rare Disease Day. If you would like to donate $5 to the bone marrow research that’s being done at the University of Minnesota, you can text “BELLA” to 50555. The research they are doing there could lead to cures, not only for EB, but for other rare genetic diseases! I am excited for the opportunity to honor Sweet Bella in this way.

I know that’s a lot of “money talk.” Sorry about that. I just want to make sure I get the info out there. You can do with it (or not) what you will. :) Thank you so much for being with us on this journey and for loving our little family. We are so blessed!

happy birthday, jonah

My Sweet Jonah,


I can't believe it but today you turn two years old. Jonah, I wish I could tell you how how much these last two years have meant to Daddy and me. When you were born, we didn't even know if we had even one year. And we have tried to enjoy every single day. The truth is, we don't know how long we have you, and you don't know how long you have us, but I think that makes every day even sweeter. 

Two years ago today, we were filled with excitement and hope. But when you were born, we tottered precariously, somewhere between joy that you were alive and despair that you might not be long. It was a strange road, and honestly, the first six months are mostly a blur. I feel like we were all in survival mode, trying to help you grow and thrive (and force-feeding you) and keeping up with all the bandage changes, puke fests, and doctors' appointments.

But now, Jonah. Now, things have settled. Daddy and I have a better routine. You have a g-tube. Things have gotten easier. Not because things have changed so much, but just that we have all settled in to our "normal," and God has worked on us A LOT. Glorifying HIM is our purpose. Finding Joy and Contentment in all things is our purpose. Reaching out to and helping others is our purpose. You have opened so many doors. And now, we can't wait to see where God will take us through those doors. We just want you to grow up loving your God and loving other people. I think God, through your EB, will give you an extra heap of understanding, compassion, and sensitivity to what others suffer, and I can't wait to see how He uses you and your story.

Please don't misunderstand me. If I could take away your pain and your EB, if I could take it on myself so you could be free of it, I would in a heartbeat. I HATE that you are in pain. I hate the physical suffering you have to endure, and the emotional suffering you will have to endure because you are "different." But Baby, I want to tell you right now, today, at two years old, that you are THE MOST BEAUTIFUL and AMAZING person I have ever known. The way you face your pain and all that you have to endure is beyond amazing. YOU CHOOSE JOY, Sweet Jonah. What a lesson to all of us.

While we're busy whining and complaining about how things aren't going our way, you are showing us to look beyond ourselves. I know you'll face hard times. I know this life won't be easy for you. But you know what? God doesn't promise us easy. He doesn't promise us "fair." But He promises that He will be with us every step of the way. We are never alone. YOU are never alone, Jonah. 


Thank you, Sweet Boy, for the love you've given us over the last two years. Thank you for what you've taught us, for who you're becoming, for the JOY you've brought into our lives. 

Our prayer for you is that you'll always turn to God for your strength and purpose. Our love for you is only a fraction of how He loves you. And I, even, find that hard to believe. Because I don't feel like I could love you even one more ounce. You are the best thing that's ever happened to me.


Happy Birthday, Baby. 


All my love forever,

Mommy


Fear not, for I have redeemed you. I have called you by name. You are mine. - Isaiah 43:1

happy party day!

We had a great day today. It was beautiful (but a little chilly), and Jonah had a great time with his cousins and family, and getting to spend all afternoon outside.





The real day is tomorrow. Jonah's breathing is still sketchy and I think he's trying to fight off something else... or maybe the same thing. All of that to say we'll be taking it easy. Kim and her family are flying out tomorrow afternoon. Glad to have a little more time with them and some time to rest before the beginning of another week.


Jonah's EB Auction is at $5,535. I love the money it makes for DebRA and just how daggone fun it is. Less than 24 hours to get your bids in. The auction ends tomorrow (Sunday) night at 8:00pm EST.

this sweet thang...

This Sweet Thang...

is having his SECOND BIRTHDAY PARTY tomorrow! We are loving having Matt's family in town, including his sister and family from New York. All my family is coming tomorrow. We are having a family-only very laid back party at the house. The complete opposite of last year, but I'm okay with it. Last year was a blast, but was a ton of work and a ton of people (around 250-300). I'm looking forward to a quiet, casual, time with our families, celebrating the amazing life of our miracle child.

Love me some Jonut.

Jonah's super cool t-shirt is from Luna B Tee, who will be doing an online fundraiser for Anton, hopefully in March!

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Auction Update: In about 26 hours, ALL ITEMS HAVE BIDS, and we've raised around $5,000! God is amazing. And you guys are pretty snazzy too. :) If you haven't checked out the auction, you can see the amazing items HERE.

THUNDERCATS ARE GOOOOOOOO!

http://jonahsebauction.blogspot.com

cute photos and great news

One day last week, Jonah and I met up with our friends, The Smittys at the park. I don't remember what day it was, but it was BEAUTIFUL. They were sick, Jonah was sick, but we all just needed to get outside. Jonah had just started his steroids, so he was kind of hard to please, but it was still nice to get out of the house.


Did I mention the day was beautiful?

And I think we're all long overdue for an Anton update. Several pieces of good news - the non-profit in Anton's country that is advocating for him has convinced the hospital, for now, to keep him there. I truly believe that is a direct answer to prayers. For now, they can advocate for Sweet Anton there, and we can advocate for him at the feet of Jesus. It's a pretty huge honor, don't you think? 

We have raised over $2,000 through the Chip In button on Hope for Anton, but the total on his Reece's Rainbow page (which includes the Chip In donations) is OVER $10,000. We are doing this! Do you realize his Reece's Rainbow page went up on February 8th? We (and many others around the world) have raised over $10,000 in 15 days!!! Thank you from the bottom of my heart for your donations, your fundraisers, and for advocating for him. We have Thirty One, Tastefully Simple, Pampered Chef, and Avon Fundraisers going on, all to benefit Anton! And a new opportunity will be up first thing in the morning. Please take a look if you haven't. Also, I don't see us stopping any time soon, so please keep sending your ideas and suggestions. If we finish raising Anton's money, we'll just keep going for all the other equally deserving  kiddos out there. 

And in HUGE news, JONAH'S EB AUCTION STARTS TOMORROW NIGHT AT 8PM EST. 

Please check it out, bid, and help us raise money for DebRA. One of these days, EB will just be a distant memory. I can't wait!